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Last Thursday, a couple was arrested in Oregon and charged with first and second degree manslaughter in the death of their daughter who died in February. It appears to be that their daughter died from untreated T1 diabetes.

This has happened before and I am sure it will happen again.

In as much as we tend to immediately become angry, it is important to note that this is not a cut and dry established precedent in criminal law. When it comes to religion, faith, and the healing and medical process, the two do not always mix, and more than that they are not easy to examine separately. Here is a copy of the story but my article today is to go further than just share the story.

The child died in February, they were arrested last week. For months to pass without an arrest is a clear sign that this is not a slam dunk case. This got me to thinking.

I remember when I had written about another case like this a few months ago. I found it interesting at both the outrage and also the compassion felt towards the parents’ who some believe were not fully understanding; for whatever reason they didn’t.

Today, my goal is to not only just inform you of this story, but to also inform you that I went a bit further. I had questions as to how this could even happen and I wanted to know more than ‘just the story’. I figured you would want to know more also.

There was a study done on 172 children. In the study there was evidence that parents withheld medical care because of reliance on religious rituals and document sufficient to determine the cause of death between the years of 1975 through 1995. The study was done by an MD, Dr. Seth Asser; and a PhD, Dr. Rita Swan.

The study revealed that 12 of the children who died during this time frame, due to withholding medical treatment, were children with T1 Diabetes; the largest among all specific disease states with the exception of pneumonia in varying degrees (cancer was broken down into various forms of specific cancer).
The entire study can be read here.

I tracked down and spoke to Dr. Swan who told me that she has ‘been at this’ for over 30 years. She shared a horrific story of one of the T1 deaths that I will not share (it was truly disturbing) but will tell you that Dr. Swan stated the death, and what happened during the trial, was ‘disgusting’. She created a website called CHILD, Inc which is an acronym for Children’s Healthcare Is a Legal Duty.

She has been an advocate since she herself was part of this practice and she reveals her story on her website (you can scroll on the picture over the home page, when you see Matthew Swan, you can read their entire story). In part she writes: After nearly two weeks of serious illness, a practitioner said Matthew might have a broken bone and that Christian Scientists are allowed to go to doctors for setting of broken bones. The Swans took Matthew to a hospital, where the disease was diagnosed as Hemophilus influenza meningitis. He lived for a week in intensive care. The Christian Science practitioners would not pray for him while he had medical care.

My conversation with Dr. Swan was extremely enlightening. To speak to a mom that had been caught up in turning their backs on conventional medicine due to a faith-based means of strictly healing by prayer; then realizing that may not have been the correct choice; and then to try to achieve goals to help children who seem to have no choice in the matter whatsoever; just left me breathless.

I asked Dr. Swan why it would take so long from the time the child died to the time officials brought charges against the parents; and she stated that in this recent case in Oregon, “It was actually pretty quickly”. There are many reports from the medical examiner’s office that must be evaluated to know the specific cause fo death and whether or not it could have been prevented. Everything must be weighed to determine that there are charges strong enough to be bought forward. Remember; the parents did nothing wrong and must be proven otherwise; not the other way around.

She stated also that it is a difficult situation because in many cases specific churches will state that they actually did not tell the parents they should not get medical attention but she knows first hand that they will say that ‘God will heal (their child)’ and ‘God doesn’t like for them to do that.” (seek medical attention). That can weigh heavily on an individual active in a church believing in this approach.

She informed me that in the thirty years she has been fighting, changes have been made. Religious exemptions have been repealed in many states when it comes to withholding medical care but the sound in her voice makes me think it is a lonely fight. A long fight.

I could not find much more than what I found in Dr. Swan’s site and other stories where this unfortunate turn of events occurs.

The legal system is surely in place for a reason but I kept coming back to the same thought; how my heart breaks for the child who could have been saved. Seems senseless to me. Just all so senseless.

I have never looked at Labor Day as the end of something. I have always looked at it as the beginning. perhaps when I was a younger grammar-school child, I was not such a big fan but I really loved my high school and college years and Labor Day always meant those exciting days were around the corner.

As I grew older and earned my AFL-CIO Union cards for acting; Labor Day was a reminder to me that I had earned something that so many in my field wanted; my Screen Actor’s Guild (SAG/movie), AFTRA (TV), and Equity (Stage) cards that meant so much to me and my career.

Proudly a Union member, I relished in the Labor Day activities. Never did I think that the AFL-CIO would play such a major role in the one dream I have been in pursuit for the longest, a cure for my kids.

The Building and Construction Trades Department of the AFL-CIO is made up of men and women in the various trades around the Unites States…..in essence; they built and build America with value on display every day. In 1994 a dream was realized. These same men and women had joined forces with a small group of parents who believed that building a research center focused on curing diabetes would be necessary to advance the dial on curing the disease once and for all. That building was the Diabetes Research Institute at the University of Miami

For almost 30 years, the D.A.D.s (Dollars Against Diabetes) Events and the LOL (Labor of Love) Golf Tournament have made up the BCTD’s bBueprint for Cure program benefitting the DRI. Snoopy, in a hard hat, has been the representation for DAD’s Day Events for almost 15 years.

Once the money was collected, the first brick was laid. And then another, and another, and up went an 87,000 sq. ft. building that would be housed with the most collaborative and brightest in the diabetes research world. The beacon was lit and virtually every diabetes organization helps fund the crucial work because the advancements continue.

One brick at a time was placed until completion and the building opened its doors. One brick at a time was placed offering the hope and dreams of so many who wait for a cure. Truly the recent advances being worked on inside this building have given me a hope like I have never had before. It is the hope inside me that could have only been given because those doors were opened in 1994.

That Union tradition under the leadership of Sean McGarvey as President and Brent Booker as Secretary-Treasurer, along with their membership across this great nation; continues to raise over a million dollars annually for the DRI to achieve the one single-minded goal; a cure.

I have the honor and privilege to serve as the liaison with the Foundation and these wonderful people. I have been fortunate to travel the country to speak at events and share with them the research updates. I have seen the look in their eyes when they tell me that a member has a newly diagnosed child. I have cried with them. I have shared with them. I have enjoyed their incredible efforts with over 60 different events happening around the United States annually. I hear in the voices of Rob Severn and Bobby Crider, along with their colleagues, the importance of still trying to ‘grow’ these events each year.

They DO NOT have to this; the BCTD does not have to help find a cure for diabetes.

It is enough to try to employ our returning veterans and better train them with skills they can utilize in the work force. It is enough to look after legislation that will impact their members. It is enough to constantly look to increase the employment of members each and every day.

But they do. For you, your children, and mine.

To those living with diabetes and/or having a loved one with diabetes I ask you to stop, this Labor Day, and realize that one of the leading diabetes research centers in the world was built by a group of men and women who care and still care to this very day. It is because of them we will walk the road to a cure; and we will get there——“one brick at a time.”

Sometimes things are done that just leave me scratching my head. Today is such a day. The best part is that you can do something about it, and to be honest–this just makes no sense to me whatsoever.

The FDA is planning a series of ‘patient meetings’ over the next five years to better understand specific diseases. It astounds me, and is a glaring mis-step, that diabetes is not on that list. That’s correct. Diabetes will not be included. My guess is that diabetes is not on the list (and my guess only) as I look at the list of the other diseases included is that someone at the FDA believes that they have all the necessary information needed to make decisions moving forward.

This is a mistake.

In the Diatribe sponsored petition, they state;“We need to tell our story to the FDA: about the need for accurate strips, more physiologic insulin, a broader range of drugs, and the Artificial Pancreas.”

These issues should be listed as very important to all of us and if you add Ed Damiano’s Bionic Pancreas (which is somewhat different from the AP utilizing both insulin AND glucagon) and those many organizations looking at biological cure possibilities that may, and will absolutely, be up against hurdles in the FDA process; everyone who has a loved one with diabetes, or has diabetes, should sign this petition.

We need to be given the opportunity for not only us as the general public; but experts like Ed Damiano, Dr. Camillo Ricordi, Dr. Aaron Kowalski, Dr. Bernhard Hering, and so many more to join together to be heard and stress the importance of both treatment options and cure related focus that needs to be addressed by the FDA in a manner that is both expeditious and comprehensive in scope.

The examples given in the Diatribe (owned and operated by DOC’s own and wonderful, Kelly Close) petition are only but a few issues in the ever-changing diabetes landscape that will be facing the FDA over the next five years, we cannot; and should not; allow our collective voices to go unheard.

If diabetes has any importance to you whatsoever (and it is my hope that just reading that sentence annoyed you because we all know that it is hugely important to all of us) in better management tools, medications, insulins, and cure related research—I urge you to sign this petition.

This is crucial for all of us to join together. Type 1; type 2; LADA, Gestational and any other form of diabetes you know of; our voices MUST BE HEARD.

Under the comment section of the petition, I wrote:With so many aspects of diabetes that will be before the FDA in the near future; it is too crucial to be detached from those who are in the know about matters of treatment and potential cures. It makes no sense to omit those active in this disease state to assist the FDA. The diabetes community should be included in the upcoming FDA ‘patient meetings’.

If we can not convince the FDA how crucial it is that our voices be heard; the silence will be deafening. Period.

Today begins my second year and it is hard to believe that it was just one year ago I hit the ‘publish’ button and my first daily writing was posted. A whole year. I have written columns for years at dLife, but a year ago started my daily writings and it has been a most exhilarating journey.

I’m so thankful for the many people who take the time to read what I write and as I stated a year ago; “funny thing about diabetes is that we can never know enough…..can we?”. That saying still holds true.

I have stated a million times that no one makes more mistakes than I in this diabetes journey and I’m always looking for a reason and a way to learn more. I’ve stated a thousand times that I write about my feelings about what I experience, what I hear, or what I may read. And if you disagree with me; you surely are free to express yourself and tell me why you disagree, or why you agree; but most of all it is my hope to continue the conversation about diabetes. To open a dialogue and to share things that we all may find interesting as well.

I hope to continue that effort.

Almost every emotion has been shared at one time or another. The pain of a lost one, the sharing of kids and adults LIVING with diabetes, the highlighting of an individual who seemed extraordinary in their efforts no matter how big or how small, joy in a scientific finding, frustration in the lack of education, laughter at the sense of humor of some, and items that peaked my interest and also seemed to have peaked your interest as well.

As a reminder, I work at The DIabetes Research Institute Foundation because I believe in their cure-focused mission-if I knew some place better I would be there. I respect other people’s choices to support other organizations, and I believe in all my heart and soul that there are surely enough choices out there for everyone and anyone to find a place to help that fits perfectly with how they can help as well. I will continue to share those efforts of others, no matter who or what they support, if it makes a difference in this world.

There are no entities at the end of the day; there is just us; the diabetes community. Made of people. A whole lot of wonderful people.

No one place is perfect and I have stated before that it will be up to those who are impacted in some way by diabetes to make a difference…….no one will do it for us. I like to, and will continue to highlight, those who strive to make a difference in a way that THEY are able. From celebrating the fact that their child has achieved something important to an organization trying to change the world; I celebrate those victories.

I have made mistakes over the last year too; and I have learned the power of the written word, no matter who writes it–if it is out there, it impacts others. But there is nothing more rewarding than the messages I received that informed me that I may have somehow created a thought, stirred an emotion, touched a heart, and even helped someone through something I wrote……..THAT is what is about for me.

I have been at this for almost 21 years. Many people with diabetes have no choice. And as long as my loved ones have to stay at it, so will I. For as long as they must, I will too.

This being the start of year two and the end of year one, I would like to thank David Edelman, who encouraged me to start and helps me often on this journey; and Gina Capone who gave me my Diabetes Dad logos and inspires me also. I would like to thank my many colleagues who inspire me daily at the DRI and in the Diabetes Online Community (DOC) who teach by doing; and they do much.

But above all I want to thank all of you for somehow or some way finding some of what I write interesting enough to both read and sometimes even to share. You have changed my life, and for that I humbly thank you.

I love your spirit, your ability to share an opinion, your drive toward perfection for your self or your loved one, and above all your ability to just ‘not do nothing’ to make this a better world for all of us.

We have each other and it is because of our collective strength, diabetes just will not do in our lives. Let’s keep looking to manage it daily, look to keep working together, and look towards the day that the advancement to a cure leaves the discussion table and becomes a reality for all.

I received this letter recently that was written over a year ago. “Di’ shared it with me about two weeks ago. Read it, it says it all.

Dear Mom and Dad,I saw the look in your eyes today.

I’m sorry that I did not have as much time as I would have liked to spend with you. It has been tough. Being told that your child has diabetes is something I never knew could happen. It is something that we could have never expected.

There is a list of things we need (and continue) to learn and learn quickly so we could take Susie out of the hospital and start this ‘new normal’ in our household. Michael is scared because he thinks his big sister is not coming home again, and Tiffany is just worried about her little sister. We have lost all track of time.

Seeing you both today, I just had to write a few things that I wanted to say but I could never get the words out right now. Raw is how I feel. The words would never come to me without completely losing it.

Balancing the kids’ feelings, Susie’s feelings, and trying to learn everything we need to know about diabetes is like a mountain a million feet high and wide and Chris and I stand at the base of it; not trying to figure the how, that is too hard; but rather where to even begin.

But we will.

You and daddy taught me to take on whatever is sent our way. You taught me to rely on each other as you did when we lost Mickey. I never understood that pain and still don’t as much as you both I’m sure; but my heart is truly feeling a pain that I never knew it could. When Mickey died, we were all crushed. We learned to cope, and to understand that ‘living forward’, as daddy always says; is the only way we can be.

One can never understand when it comes to your own child. I am so sorry that I never really understood how you both must have felt. Your pain must have been never-ending and you surely hid much of it from us.

It is now 3 am and I am awake. I just checked Susie’s blood sugar and she is not where I think she should be so I gave her a little insulin and will wait. She was so high last night, she pee’d the bed and she was so upset. Two nights ago she was so low that I gave her some food to raise her blood sugar. Always something, right daddy. 🙂

Mom asked me something last week and I wanted to answer her now that I could find some time to write this letter. See asked what you guys could do to help. I was shocked how much she learned in the last three weeks. I’m so thankful that you both think that you could watch Susie and Michael when we take Tiffany to regionals next week. It is so hard to try to balance everything.

I will call mom and work out some time to go over everything and leave Susie with you both for a few hours this week so you can at least not take on everything at once. I guess I am crying a little now; it is all so hard.

I am so grateful you are both in our lives. Being close as always been a strong point in our home, you taught us that we would need that some day.

Some day; is now here.

I need to recheck Susie’s blood sugar again and try to get some sleep. I’m no good to anyone fully exhausted. I have read on-line so many ‘grand parents’ who cannot cope with having diabetes now in their lives. You two have taken it head on. But that is how you do everything. I just hope that I can be half of what you were to all of us growing up; and be that for Susie.

Thank you (I probably should have said this more often and am now sorry I didn’t) so much for being there.

I love you,Di.

If you have not written your parents lately, perhaps after this you might want to. “Living Forward”—-my new phrase for life. I love it.

Why, despite their diabetes, to individuals choose to laugh in the face of challenges and do the unthinkable?

Why do they climb mountains, ride bikes on death-defying terrain, undertake insane miles of running-riding-swimming in one outing, play professional sports, and push themselves beyond the limit of both exhaustion and imagination?

Yesterday, Jen Alexander set out to swim the Northumberland Straight, part of the Gulf of Saint Lawrence in the eastern part of Canada; surrounded by Prince Edward Island. It was not enough to be the first documented person to awim The Straight in a single day-double crossing in 2007, it was not enough to be in the water for over 19 hours on that date; not for Jen Alexander; nope—-this attempt was to do it utilizing only one arm.

Seriously? Yes, seriously.

This one had me worried. I love Jen and her incredible spirit captivates your heart. This time I thought the envelope was being pushed too far. I was scared for her. When I read that she was safely in the boat with her crew after over 9 hours of incredible odds-breaking swimming, I breathed a sigh of relief.

Swimming, nine hours, insane.

When I speak to; or read about; Jen, or Jay, or Missy, or Tony, or Andy, or Charlie, or Jay, or Sebastian, or the so many others who attempt incredible bouts of physical endurance, the answer is almost always the same; to prove to myself, which also proves to many more out there, especially kids, that diabetes should stop them from nothing.

Nothing.

Jen once wrote, “Sometimes, I don’t know how the rest of the world survives without this music in its heart.” She was writing about the music to step dancing to which she also engages when not skimming her body across a body of water like a human pebble. Music in the heart is a good thing for all of us.

When you feel like diabetes is winning, for the day, the week, or the month; look up some of the attempts that these incredible people have done; just because they would not be stopped by diabetes.

Crazy? Well maybe a little. But it is only crazy to us; to those who do not know how to dream that big. We only wish we can. But know that we can all take some huge inspiration from their little bit of craziness (which we only wish we could dare to dream about) and know that if they do not let diabetes stop them in these monumental efforts; we can get through the day. You cannot do anything about diabetes coming into your life but you surely can do something about it once it arrives. The choice is yours.

So whether it is Jen in her swim, Missy running a million miles, Jay or Andy pushing an Ironman race, Tony riding a bicycle on an insane terrain, Charlie driving at over 200 miles per hour, or getting through just today in a world of diabetes; inspiration is all around us. Look for it, listen for it; it will become the music in your heart.

I just love seeing all of the pictures posted of kids at their first day fo school. There is a ‘newness’ to it, isn’t there?

The year begins full of hope and we, as parents, are ever watchful to notice that indeed our children are growing up. And that is a fabulous thing.

With our youngest now out of high school (yikes!) it is such a time to reflect of those little people jumping on the bus for their first day of school. It seems so long ago that they all started. Now I know that many people are full of anxiety because school and diabetes is sometimes a real life water-and-oil mixture but take the time to realize what is happening with your child.

I promise you that diabetes will be all around your child before and after the first day of school so why not take the time to just stop, watch, and realize just how great your child is doing.

Enjoy this time with pictures and signs and happiness. Our kids are growing up. And they are growing up healthy with their diabetes. Take the time to realize that this ‘first day of school’, no matter what year your child is in, is happening because of you.

The sleepless nights, the shots, the badge of diabetes police worn proudly; stop for a moment and take in the fact that your child is growing up ‘just fine’ because of you. NO ONE will, or can understand that, unless they are a parent.

And when you are a parent to a child with diabetes, every now and again, a moment comes along that YOU MUST stop and take notice of your wonderful, tired, sleepless nights, frustrating, and fearful efforts. For us, it was always the first day of school.

So much so, that the night before they started school each year the family was treated to ice cream sundaes. My dad did that for us when we were growing up. That tradition will continue I am sure.

Sometimes ice cream sundaes are perfect to enjoy. Just like the first day of school. Congratulations parents; enjoy.

I had a great conversation with someone recently, during my travels, that was incredibly enlightening. “Ed” was diagnosed when he was 22, he is now around 35. He told me that his diabetes is in very good control and he wears an insulin pump and a cgm.

When speaking of my kids and my involvement, he stated that it was commendable at the level of our involvement and he stated that he really did not see the need to be involved with any diabetes charitable organization. I saw this as an opportunity for me to learn.

I asked him why.

He stated that there was enough people out there doing what needed to get done. His little push would not accelerate the research for a cure and the pharma companies will continue research and development as long as THEY THINK they can capture a bigger piece of the diabetes financial pie.

I asked him if he would allow me to ask a few blunt questions. I made it clear that my tone would not be to challenge but to learn. He said, “fire away”.

I stated if we all felt that way that nothing would get done to which he replied that someone would always feel the need to ‘do something’. Life gave him a curve ball of which he was not very happy. He shared that he spent his ‘diabetes time’ on how to best take care of himself which was a full-time job in itself. If he learned, and learned enough to keep him healthy, he stated that should be enough to ask of one person. It is a different perspective if you have it than if you have a loved one with it, he explained.

He was older when he was diagnosed. He stated that if he was younger and watched as his parents did as many of us ‘did with the diabetes Charites’ we supported, he might feel differently. But he didn’t and the focus, for him, has always been to take care of himself. I asked him about ‘giving back’.

(Here is where I listened very carefully)

He stated that he gives his money to (he named the) charity. And he supports the same charity with time as well. And a good deal of time. He had a loved one with whom he was very close who was taken by that disease. It had nothing to do with diabetes.

“I’ll be fine (with diabetes), they need more help than I do so I help them.”

I thanked him for his answers and I truly did not see the need to convince him otherwise. He took care of himself, he gave to a cause that interest him, and he gave of himself. When I asked him again about diabetes causes, he said that having the disease means he has to deal with it 24/7—-that was how he supported it.

Cure? Technology? Camps? Those less fortunate? He stated that he would leave that for others who had/have a loved one with diabetes. His emotions were only tied in diabetes to care for it in himself. Which he does.

The discussion was enlightening. The man took care of his diabetes; gave to the philanthropic cause of his choice and also gave time to the same charity.

As we parted ways, a voice inside told me that I had a problem with what I heard; but another voice stated that I don’t have a problem with what I heard.

I ask you; as I do often, what do you think? Please answer here by ‘replying-at-this-site’ so all can see (this gets posted in many different places).

…your child, you, your mother, your father, and any loved one you have with any form of diabetes…..this pertains to you

What if you knew that the accuracy of your child’s glucometer was wrong. Worse yet, what would you do if you found out after 4 months that the glucometer you were using was wrong? What if you found out it was off by a lot. What if you found out too late.

What if the problem led to a serious medical situations for your child. THIS ISSUE is not to be taken lightly.

I hope I have your attention.

I have heard a million times how much people want to do something.
“I want to help.”
“I wish I could help.”
“I have so little time to help.”
“How can I help.”

Well, here is an easy one.

This situation impacts anyone who has any form of diabetes and needs to check their blood sugar (which is every form of diabetes). If this issue goes unresolved, we are heading to a place of meter accuracy that no one wants to be. No one.

I know a few people who lost their child to diabetes. I cannot imagine how they go on. But these few are all reflective of a spirit that is out there that needs to be recognized.

They are reflective of those who have lost a child and those that have not; they reflect those people who believe that ‘doing nothing’ is unacceptable.

There are people out there, that are not part of any huge organization, but that by any angle means that they are not ‘doing something’.

I have talked before that it does not matter what ‘doing something’ is defined by you, it just matters that you just “don’t do nothing”.

These people I am speaking of today have small organizations or events that impact just the community around them. Their impact is significant in the people they serve.

I love this story:
A man and a boy are walking along the shore line and the man bends down, picks up a starfish and throws it back into the ocean. He does this about every 5 minutes as there are hundreds of them along their walk together.
The boy chimes in, “That’s a waste of time. What difference will that make, there are hundreds of starfish.”
The man replied, “Sure makes a difference to the ones I throw back, doesn’t it?”

Now maybe they just educate those in their child’s school; perhaps they run an event that supports a local pediatric center, or perhaps they lecture in their local library about diabetes; whatever they choose to do will surely make a difference to the world around them.

Sometimes there is a need to try to help all of the starfish; sometimes helping only one matters most.

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Disclaimer

This is my blog. I am not a medical professional and any medical written word is read somewhere else and will be credited accordingly. There is no substitution for YOUR medical team. I am not paid for what is written on this blog.